Project Description

The New England Regional Genetics and Newborn Screening Collaborative (New England RC) cooperative agreement, awarded by the U.S. Department of Health and Human Services in June, will address the needs of individuals, agencies, and health care providers who interact with and treat individuals with genetic disorders and their families. The $4 million cooperative agreement, to be received over five years, will provide technical assistance, accessible information, educational opportunities, and other support for public health officials, consumers, advocates, primary and specialty health care providers, and other agencies and individuals who serve as formal and informal supports to those with genetic disorders throughout the New England region.

As part of the project, the New England RC will encourage collaboration by establishing a Regional Coordinating Center at the Institute on Disability at UNH. The primary goal of the New England RC is to assure that individuals with genetic disorders and their families have access to quality care, appropriate genetics expertise, and information that provides accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective care. One activity of the Regional Coordinating Center will be to organize and support six state teams, assuring that resources to solve local needs are readily available to all. The state teams will facilitate access to genetics services and technology, serve as focal points for genetics education and information, and examine and address ethical, legal, and social issues, as well as current public policy and public health.

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Documents & Publications

New England Genetics Collaborative Cooperative Agreement Narrative (pdf)

New England Genetics Collaborative Cooperative Agreement Work Plan (pdf)

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Project Staff & Contacts

Amy Schwartz, Project Coordinator
603.862.5099
amy.schwartz@unh.edu

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Resources & Links

The American College of Medical Genetics

National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups

Maternal and Child Health Bureau, US Department of Health and Human Services

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